儿童期新诊断 1 型糖尿病住院特征：儿童过去和现在经历的现象学研究。
Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children's past and present experiences.
机构信息
Department of Global Public Health and Primary Care, University of Bergen, Kalfarveien 31, Bergen, N-5018 Norway ; Department of Health and Nursing Sciences, Faculty of Health and Sport Sciences, University of Agder, Jon Lilletuns vei 9, Grimstad, N-4898 Norway.
Queen Maud University College of Early Childhood Education, Thrond Nergaards veg 7, Trondheim, N-7044 Norway.
出版信息
BMC Nurs. 2015 Jan 17;14(1):4. doi: 10.1186/s12912-014-0051-9. eCollection 2015.
BACKGROUND
Our understanding of children and childhood has changed over the last few decades, which may have an impact on children's conditions in hospitals. Children's rights have been strengthened by the "Convention on the Rights of the Child" and ward regulations. The aim of this Norwegian study was to identify potential characteristics of children's lived experience of being hospitalized diagnosed with type 1 diabetes today and from a retrospective view in the period 1950-1980, despite the many obvious external changes.
METHODS
This study presents a further analysis of data from two previous phenomenological studies. The first had a retrospective perspective, and the second assumed a contemporary perspective. Twelve adults and nine children who had been hospitalized for newly diagnosed type 1 diabetes at the age of approximately 6-12 years old participated. The adults relayed narratives from their childhood memories through interviews, and the study with the children was designed as a combination of observations, in-depth interviews, and photographs. A hermeneutic phenomenological method was used in the analysis.
RESULTS
The analysis revealed a meaning structure that described a tension between vulnerability and agency in the experiences of being hospitalized as a child, both past and present. The experiences may further be characterized as alienation versus recognition and as passivity versus activity, relating to both the hospital environment and the illness.
CONCLUSIONS
To a greater extent than ever, children today tend to experience themselves as active and competent individuals who can manage their own illness. Previously, children seemed to experience themselves as more vulnerable and less competent in relationship to their environment and illness. Presently, as before, children appear to desire involvement in their illness; however, at the same time, they prefer to share responsibility with or hand over responsibility to adults. However, living with diabetes was and remains demanding, and it affects children's lifeworld. Balancing the children's vulnerability and agency seems to be the best way to care for children in hospitals. In this article, we thus argue for a lifeworld-led approach when caring for hospitalized children, paying attention to both their vulnerability and agency.
背景
在过去的几十年里，我们对儿童和童年的理解发生了变化，这可能会影响到儿童在医院的状况。《儿童权利公约》和病房规定加强了儿童的权利。本挪威研究的目的是确定今天被诊断患有 1 型糖尿病的住院儿童以及从 1950 年至 1980 年回顾性视角的潜在生活体验特征，尽管有许多明显的外部变化。
方法
本研究进一步分析了两项先前的现象学研究的数据。第一项研究具有回顾性视角，第二项研究具有当代视角。12 名成年人和 9 名儿童参加了这项研究，他们在大约 6-12 岁时因新诊断的 1 型糖尿病住院。成年人通过访谈讲述了他们童年时期的记忆，而对儿童的研究则设计为观察、深入访谈和照片的结合。分析采用了解释学现象学方法。
结果
分析揭示了一种意义结构，描述了过去和现在住院期间儿童体验中的脆弱性和能动性之间的紧张关系。这些经历还可以进一步描述为异化与认同、被动与主动，既与医院环境有关，也与疾病有关。
结论
与以往相比，如今的儿童更倾向于将自己视为能够管理自己疾病的积极、有能力的个体。过去，儿童在与环境和疾病的关系中似乎显得更加脆弱和能力不足。现在，和以前一样，儿童似乎渴望参与自己的疾病，但同时他们也更愿意与成年人分担或移交责任。然而，糖尿病的治疗既具有挑战性，又影响儿童的生活世界。平衡儿童的脆弱性和能动性似乎是护理住院儿童的最佳方式。因此，在本文中，我们主张在护理住院儿童时采取以生活世界为导向的方法，关注他们的脆弱性和能动性。
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